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Cystic Fibrosis Trust

Let's protest for Orkambi

Thank you for taking part in our Orkambi protests across the UK on Monday 26 June.


On Monday 26 June we held a day of action for Orkambi calling urgently on the drug’s manufacturer Vertex, the NHS and governments across the UK to agree on an affordable price that can make the life-changing drug immediately available to those who so desperately need it.

The cystic fibrosis (CF) community protested outside of Holyrood, Stormont, the Welsh Assembly and Downing Street, while hundreds of people with CF and supporters took part at home by sharing their stories on social media using the hashtag #OrkambiNow. Read some of the stories shared by the community online.

Trust Chief Executive David Ramsden wrote to Vertex and the NHS in all four UK nations appealing to them to reach an agreement on pricing for Orkambi and end the wait.

Read the letters

Protest responses

We will be sharing the responses from NHS directors and Vertex as and when we receive them – please continue to check back for further developments.

Lobby your local politician

While we continue to push for a decision on Orkambi, you can keep up the pressure on the Government by lobbying your local politicians using our template letters for England, Wales, Scotland and Northern Ireland. We would encourage you to personalise your template letter as much as you can – politicians respond well to personal stories, so let them know what Orkambi could do for you, and why it’s so important that the treatment is made available without delay.

England

Download the template letter and find details of your MP and their email address on the parliament website.

Wales

Download the template letter and find details of your AM and their email address on the National Assembly of Wales website.

Scotland

Download the template letter and find details of your MSP and their email address on the Scottish Parliament website.

Northern Ireland

Download the template letter and find details of your MLA and their email address on the Northern Ireland Assembly website.

Help us keep track of which politicians have been contacted by copying us into your emails to your MPs, AMs, MLAs or MSPs, using the email address: publicaffairsteam@cysticfibrosis.org.uk.

Supportive parliamentarians 

Download a list of all the parliamentarians across the UK who have supported our Orkambi campaign.

Keep sharing your stories

Share why you need #OrkambiNow by sharing our posters and images on social media - don't forget to include your own stories.

Download our social media images:

Print off one of our posters, fill in your own story and then share on social media:

What is Orkambi?

Orkambi is a precision medicine that treats the F508del mutation, the most common CF mutation, which affects around 40% of people with CF across the UK. It has been licensed for use by people with CF in the UK, but is not currently provided by the NHS to the people who need it, except in rare cases on compassionate grounds. Find out more about Orkambi.

For further information, please email our public affairs team




Research

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

Discover more

What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

Read on

More information

If you would like to find out more about any of our campaigns, publications or anything else, get in touch and we'll be happy to help.

Get in touch